We are Cavernoma Alliance UK

Founded in 2005, our aim is to provide support and information for all those affected by cavernoma including friends, family, carers and professionals.

With over 2800 members in the UK and worldwide, the charity aims to raise awareness of this relatively unknown condition throughout the general public as well as the medical community.

What is a cavernoma?

A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry.

1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people – enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.

In this video, hear clinicians and members talking about their experiences of cavernoma. 

Our services

Telephone Support

Our telephone support line is open 10am - 4pm, Monday to Friday

Email Support

You can reach us via email at any time, and we aim to respond as quickly as possible

Events & Annual Forum

We organise multiple events around the country

CaverBuddies

On going peer support when you need it most

Professional Lectures

Presentation and research events around the country

Meet Ups

Join us, and members from your local area for a coffee & chat

Therapy

Therapy for adults, children and carers to work though concerns

Webinars

Online meetings, presentations & chats providing information & advice

Carers Support

Support, chat and advice for carers of those with cavernoma

What our members say...

CAUK and all its members have made me feel ‘normal’. I am among people who know exactly how I feel. It’s as simple as that. I am not a person with a rare condition here, I am part of a group of people with the same condition. In real life I might never meet someone with a cavernoma,but here everyone has one/many. So I’m not an oddity here.
Lorna, Scotland
Member since 2014
CAUK is incredible. It provides invaluable support online, an informative website with vital information, access to professional opinions and face to face meetings at events, amazing lectures and the opportunity to meet others who have experienced cavernoma.
A world without CAUK doesn’t bear thinking about!
Abi, Surry
Member since 2012

Get in touch with us

available from 10:00 – 16:00

CAUK Members Survey 2021 Results

We are delighted to be sharing the results from our recent member survey. We are continually working to improve the information and resources we provide so we are extremely grateful and pleased with the feedback we have received. This year has been challenging for everyone and we are so happy that we were able to offer much needed support for our members during this difficult time.

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Hopeful Acts: Planting Seeds for the Future

Looking back to this time last year, we were all at the beginning of our lockdown journeys. Suddenly, things we took for granted could no longer happen and we had to adapt to new ways of being. Our latest therapy blog post by Fiona Holiday.

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CARE Pilot Trial Annoucement

The Cavernomas A Randomised Effectiveness (CARE) pilot trial CAUK is the Patient Group in a consortium also including senior clinicians with a special interest in

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